Are there any other MMMT survivors out there?

ghee56 said:

MMMT

I was diagnosed in 2004 at age 56....stage 1C. Had a complete hysterectomy followed by radiation, internal (ugh) and external. Followed a cancer diet for about a year after from a book sent by a doctor friend....think it was called the cancer survival diet....not sure since I passed it on to others. Lots of exercise and prayer. Only residual problem is pain in the area, probably from internal radiation. Best of luck to you....How were you diagnosed? Mine was a fluke diagnosis as the result of a D&C to remove a cyst.

I did not ask what stage I am but think I saw a paper with Stage 4.  I went in for a regular PAP and surprise surprise they sent me immediately to the X-Ray dept.  and do not pass go.  I got to that clinic and they said Marti Marian is waiting for you down the hall turn right then left.  i have gone to the base for 38 years so most of the clinics know me and I know a lot of them.  Then next thing you know I am in the hospital having a D & C. I saw the sonogram and knew I had the cancer I saw it in three places but did not know what kind.  I am retired Military then Civilian RN.  And have a lot of oncology in my background.  I know how to take care of a cancer patinet but did not know how to be one so I said that to my doctor and I told him I wanted to know everything.  It has been quote and experience being on this side of the coin. Thank God I was good to my patients and really have nothing to regret. Now it is me and there are lots of wonderful people that are doing their best to help me keep on this earth a little longer and with God's blessing hope to stay here awile.  Will see what happens. By reading these posts I see there are lots of questions that I need to ask. Thanks everyone for being here.  Like you ghee56 I have pain in the abdominal area not too strong but annoying.  I have horrible gas pains and spasms and they hurt worse.  I am and have not vomitted nor have I had constipation or diarrhea so that is good.  I would like to be around for awhile to make sure the fur kids get raised.  LOL.  Such little darlings and they give me the have to part of my life right now.  Get out of bed feed them take them outside etc.  Althoght I am a fighter and have not felt sorry for myself and I decided I was going to fight this cancer with everything that I have to fight with.  Well take care and will look forward to yhour posts. Marti

marti968 said:

Courage and Hope

You know it is kind of hard not to feel that way but I decided I am not dying of cancer but living with cancer.  I never call it my cancer or at least try not too. If I refer to it as My Cancer then it owns me instead of me owning myself.  I don't know if that makes sense with what I am trying to say.  Mostly I am positive but there have been a few tears especially when my "grandson" came to visit and he is not even 2 months old.  We waited for 9 years for him and it made me tear because of all the things I am going to miss.  I have never had children but I helped raise his father when his dad's mom passed away and I also helped raise his sister. I was in charge of the unit and I made the schedule so I made sure that my hours mostly were opposite of his so he could stay in the military.  We did not do favoritism he had to do all the shifts like everyone else but I was only day shift unless I had to pull a shift because of shortages so sometimes it was a challenge to do it but we made due.  When I think of all the obsticles and challenges I have had to endure in life this is really just another hurdle to jump and try to conquer.  Attitude I think has a lot to do with things also I think.  I am about your mom's age I think.  I am 74 as of August 31st. 

I have read both of your lasts posts, first of all I want to thank you for your service to our country & the sacrifices you made for us.  Also thanks for your honesty about your feelings and tears.  My mom who is 72 has moved on to another stage of acceptance & just wanting to get it all over with.  She has completed 33 rounds of radiation & has 4 more treatments of chemo to go.  She actually sounds a lot like you, she is very very strong & I completely admire her courage.  She has been through many many awful things prior to this and I admired her so much then & twice as much now.  When we feel sad about what is going on with her she'll tell us, "I'm not dead yet!"  I think we feel more sorry for ourselves & what is to possibly or not possibly come than she feels for herself.  God bless you marti968 & keep up the fight!

marti968 said:

Staging

I did not ask what stage I am but think I saw a paper with Stage 4.  I went in for a regular PAP and surprise surprise they sent me immediately to the X-Ray dept.  and do not pass go.  I got to that clinic and they said Marti Marian is waiting for you down the hall turn right then left.  i have gone to the base for 38 years so most of the clinics know me and I know a lot of them.  Then next thing you know I am in the hospital having a D & C. I saw the sonogram and knew I had the cancer I saw it in three places but did not know what kind.  I am retired Military then Civilian RN.  And have a lot of oncology in my background.  I know how to take care of a cancer patinet but did not know how to be one so I said that to my doctor and I told him I wanted to know everything.  It has been quote and experience being on this side of the coin. Thank God I was good to my patients and really have nothing to regret. Now it is me and there are lots of wonderful people that are doing their best to help me keep on this earth a little longer and with God's blessing hope to stay here awile.  Will see what happens. By reading these posts I see there are lots of questions that I need to ask. Thanks everyone for being here.  Like you ghee56 I have pain in the abdominal area not too strong but annoying.  I have horrible gas pains and spasms and they hurt worse.  I am and have not vomitted nor have I had constipation or diarrhea so that is good.  I would like to be around for awhile to make sure the fur kids get raised.  LOL.  Such little darlings and they give me the have to part of my life right now.  Get out of bed feed them take them outside etc.  Althoght I am a fighter and have not felt sorry for myself and I decided I was going to fight this cancer with everything that I have to fight with.  Well take care and will look forward to yhour posts. Marti

I agree attitude does have so much to do with it. Have a good one and continue the fight.  Thank you for your service both in the military and as serving as nurse.  trish

So I had a lot of vaginal bleeding and had a sonogram where a "polyp" 5cm was dicsovered.  Had a D&C last Friday with polyp removed,  all went well.  On Tuesday got a call from my Dr. to come down asap to see him.  Well, the path report came back with MMMT - 
Had a PET scan on Thursday and, thank God, it had not penetrated the uterine wall and no other cells were discovered.  (Here's hoping it was read right).

So off to Tampa General Hospital next Tuesday for surgery on Wednesday.  
I don't know what stage it is, but since it is localized should be low.  We'll see.

They thought they might be able to do robotic surgery, but we will have to see.

Has anyone had a rad. hysterectomy done by robot and how was the recovery and how long did you have to stay in hospital.

I am obviously totally new to this and still can't believe it since I am totally healthy with no signs in my blood or anything else.  I am 72 and I'll be damned if I let this beat me!

Ro10 said:

Welcome Ocalagal

Sorry you need to join this site, but feel free to ask any questions.  I had robotic surgery at Moffitt cancer center in Tampa.   I was out of the hospital the day after surgery.  Recovery was good with minimal pain. You jucpst have 5 little incisions.  My surgery was 6 hours long.  When they got in there, it was UPSC, so they took 25 lymph nodes, too.

good luck with your surgery.  I hope you have a gyn/onocologist doing the surgery.   I hope you do have a low stage.  In peace and caring.

Thank you for your reply.  I have Dr. Mitchell Hoffman at Tampa General Cancer Center and yes, he is a GYN/ONC surgeon, who has a stellar reputation.  My PET scan showed only localized in the uterus after I had a D&C, so hoping for robotic so I can get home to my furries.
Sorry, I don't know what UPSC is?  Newbie!
What kind of regiment did you have to do after?  Chemo/Radio etc.
How was your stay at the hospital?  How soon did they get you up and able to go to the bathroom?
Thanks for any info you can give me.  Still can't believe it!  Damn!

Ro10 said:

Ocalagal

UPSC is uterine papillary serous cancer.  It is a rare and very aggressive cancer.  It acts much like ovarian cancer.  I did have the sandwich treatment which is 3 chemo treatments, then radiation , and then 3 more chemo treatments.  The chemo was taxol/  cisplatin.   I started chemo 3 weeks after surgery and it was every three weeks.

the stay in the hospital was good.  I went in the morning of surgery.  The surgery was 6 hours.  I did not get to a room until 3:00 in the afternoon.  I could have gone home the next morning, but the doctor did not make rounds until late afternon.  I had a catheter until the next morning.  I got up the next morning, but made sure I turned every two hours while I was in bed.  I also did deep breathing.  Nobody encouraged me to do these things, but being a nurse I knew how important it was to do these things.  I had a pump to use for pain, but I only used it once before I was going to get up.  

When I got home I walked every couple hours and gradually increased the amount I walked.  Those first walks were pretty short, but gradually they got longer.  Drinking plenty of fluids is important and keeping ahead of constipation is important.  Apple juice is what works for me. 

I hope you surgery goes well and you won't need any further treatment.  Feel free to ask any questions or express any of you fears and anxiety you may be feeling.  We understand those feelings.   In peace and caring.

RO10 </b>
Thank you so much.  Sorry you had USPC and I hope it is taken care of.  Any reactions to the chemo/radio? Hair fallout? Nausea? 
Have only begun to realize how terrifying all these monsters can be and am staying positive, except for short spurts of terror.  
Have my consult with Dr. Hoffman tomorrow morning and surgery, at this time, is scheduled for Wednesday morning at 11 AM.  Since you say it can be 6 hours would expect to be in the hospital certainly for overnight if not longer, depending if he can do it robotically.
Did you experience any incontinence afterwards?

Did they let you bring a cell phone?  Am taking my portable CD player with plenty of music, ear plugs, eye shades and fruit juice boxes.
Is there something you were not allowed to have?
Blessings to you!

nevadavox said:

Dear marti968

Dear marti968 ~ My partner Michelle has been diagnosed with the same -- carcinosarcoma/MMMT in her uterus. I read your post to her. We want you to know that even if you feel alone, you've got compatriots in this experience. Michelle has been told she is probably a stage 3. She's scheduled for radiation treatments to begin on Wednesday. She's 49, and her tumor is necrotizing (growing so fast that it outpaces the blood vessels supplying it, so some of the tissue is constantly dying. So instead of blood and spotting, she is dealing with a ton of discharge that has a very bad/foul odor. Not fun -- not at all. But while statistics are scary with MMMT, they're also outdated. There are a lot of women who make it through this if they get the right treatment and the right support. We just wanted to say that we're grateful that you're here, and that we are also here, dealing with the same thing. Much hope and healing to you!

~ Nick

A lot has changed in my progress since I first came on here.  I live alone but not truely ever alone.  I came in here to see what others were doing.  I had a  horrible doctor and he was not much help emotionally and sadly so was his medical assistant.  We did not mesh and I left his office ever to return.  I did some reasearch on CyberKnife and elected to go see this doctor. Doctor Stegman has got to be the best.  He treats you like a human being and not just a number or a pice of meat to cut up.  Will not go into that since I do not want to waste my time with negative thoughts and issues.  Suffice it to say that I am very happy with my current doctors. There must be a lesson in all of this but have not really figured out what it is. Knowing others are going thru this does help with coping and in general I have a very positive outlook and I think that is a good thing to have. I will fight this thing with everything that I have.  Time will tell what the results will be. Marti Limpert

Ocalagal99 said:

RO10 </b>
Thank you so much.  Sorry you had USPC and I hope it is taken care of.  Any reactions to the chemo/radio? Hair fallout? Nausea? 
Have only begun to realize how terrifying all these monsters can be and am staying positive, except for short spurts of terror.  
Have my consult with Dr. Hoffman tomorrow morning and surgery, at this time, is scheduled for Wednesday morning at 11 AM.  Since you say it can be 6 hours would expect to be in the hospital certainly for overnight if not longer, depending if he can do it robotically.

Did you experience any incontinence afterwards?

Did they let you bring a cell phone?  Am taking my portable CD player with plenty of music, ear plugs, eye shades and fruit juice boxes.
Is there something you were not allowed to have?
Blessings to you!

I am rusty since I have been retired since 1983 but so much of what you stay is the old standby for care even when I was still working.  But of course somethings never changed.  You gave great advice that is for sure.  I kind of play things by ear right now but I am making sure that I get the right diet.  I am guilty of eating when I am hungry and not when I should.  Sometimes I used to forget to eat all day.  I have always taken enough fluids so did not miss the food.  I now make sure I eat 5-7 small meals a day and include everythig the cancer nutritionist has told me to eat.  I eat small meals because I get full fast and if I only ate 3 times a day I think some of what I am supposed to eat I wouldn't.  Like a lot of seniors i have developed bad eating habits.  I am so glad that you are on this site and so many others.  It does make it easier and you don't only have the doom and gloom online to relate to.  Thanks for you knowledge. 

Ro10 said:

Ocalagal

UPSC is uterine papillary serous cancer.  It is a rare and very aggressive cancer.  It acts much like ovarian cancer.  I did have the sandwich treatment which is 3 chemo treatments, then radiation , and then 3 more chemo treatments.  The chemo was taxol/  cisplatin.   I started chemo 3 weeks after surgery and it was every three weeks.

the stay in the hospital was good.  I went in the morning of surgery.  The surgery was 6 hours.  I did not get to a room until 3:00 in the afternoon.  I could have gone home the next morning, but the doctor did not make rounds until late afternon.  I had a catheter until the next morning.  I got up the next morning, but made sure I turned every two hours while I was in bed.  I also did deep breathing.  Nobody encouraged me to do these things, but being a nurse I knew how important it was to do these things.  I had a pump to use for pain, but I only used it once before I was going to get up.  

When I got home I walked every couple hours and gradually increased the amount I walked.  Those first walks were pretty short, but gradually they got longer.  Drinking plenty of fluids is important and keeping ahead of constipation is important.  Apple juice is what works for me. 

I hope you surgery goes well and you won't need any further treatment.  Feel free to ask any questions or express any of you fears and anxiety you may be feeling.  We understand those feelings.   In peace and caring.

- Am finding that taking the Colace the Dr. prescribed for constipation does not work for me.  Too harsh!

I had been taking Psyllium Husk Caps before my surgery on a regular basis instead of that awful Metamucil and they have worked great.  I take two in the AM before breakfast and 2 before my evening meal.  Drinking plenty of fluids always works, but the caps make things easy and smooth and no urgency.

Just posted below about my DaVinci robot surgery.  Your information was really helpful.  My surgery was 3 hours.  Thanks for sharing!

Hope all is well with you.
Merry Christmas and a healthy and happy New Year!

Ro10 said:

Ocalagal, good to hear from you

Glad you were able to have the surgery robotically.  It makes recovery much quicker.  Sorry to hear you had cancer in a lymph node.  I suspect your chemo will be taxol and carboplatin every three weeks.  You will lose your hair from the taxol.  Taking your pills for nausea are important to ward off the nausea.  Glad you will be able to enjoy the holidays before you start your chemo.  Glad you have such confidence in your doctor.  That is important.  Just remember you did have major surgery and be kind to yourself.  Feel free to come back with any questions you may have.  In peace and caring.

Thanks, Jan, and the best of holidays to you as well.  Will follow your advice!  Have been looking online for wigs, 

Since I will need chemo (3) in January am wondering if I will be able to drive myself to and from the appointment.  I have been blessed with a wonderful neighbor who has been driving me to and from my surgery and appointments in Tampa which is 1 1/2 hours from here, but feel bad that I have to take advantage of her generosity so much and if I don't need to would like not to burden her with these appointments.  Luckily they will be local, but still.  Only about 20 minutes from my home.

Also, will have radiation (3) after first chemo and then more chemo (3) afterwards.

Can someone tell me about this, please?